TL;DR

I have very rare genetic diseases called PPNAD (Primary Pigmented Nodular Adrenocortical Disease) and Carney Complex. I had an over 7-hour long surgery in which my adrenal glands removed, when I was in 11 years old.

WHY:

I had to have my glands removed, as they were over producing cortisol and causing my body to deteriorate. I gained about 50 pounds in about half a year, which was over half of how much I weighed then. I also had constant migraines so bad I would throw up. These symptoms were caused by Cushing's, which results from PPNAD. At 11, I was given the choice to have them removed or die in my early 20s.

WHAT I DEAL WITH:

  • I have to take Hydrocortisol and Fludrocortisone daily or I'll die (within 2-3 days).
  • I have an almost non existant immune system, which causes me to get very sick quite often. I have had 2 near death experiences just from getting stomach bugs, because my body cannot absorb my medication when I get dehydrated, sending me into "adrenal shock". My body goes into a coma like state and I am treated with the urgency of a heart attack patient.
  • I also have chronic, nightly nausea which has kept me up almost every night since I was 10. (yes. every night.) No one knows what causes it. I have been to the National Institute of Health and even they are stumped. We know it has something to do with my circadian rhythm, as it is every night at almost the same exact time (9:30-10pm). When I travel to different time zones, the nausea realigns with the same time, once I recover from jetlag.
  • Understandably, this has all affected my mental health as well.

ADDITIONAL INFO:

I have a ton of freckles (username checks out) in really odd places: on my lips, inside my mouth, on my eye and eyelid, ect. It's part of Carney's.

I feel like all of this is proof enough, but here's a picture of me and a portion of my emergency medical documents. (covered over my name and other important info with sticky notes)

Feel free to ask about the condition. Most medical professionals I meet know little about PPNAD, because it's so rare, so I'm fine with explaining it in more detail. I have some pretty interesting stories about being hospitalized at a research facility, near death experiences, and living with disabilities.

So... AMA?

EDIT:

Some people wanted to see what the freckled on my lips look like, so here ya go. I'll probably keep comments and stuff open for a few more hours then be done. If anyone else has any questions afterwards, feel free to PM me.

Please limit trying to diagnose my nausea in those messages, if you're just guessing. I have really tried about every method and medication, and there's a lot of specific info that I didn't add to my post. We know that it isn't just mental, and we are pretty sure it has something to do with how much melatonin my body produces. The problem is that there is no way for me to actually test what we narrowed it down to a few years back, due to my lack of adrenal glands giving very off readings of my body temperature and hormones. I appreciate the many of you who have tried though.

Many people have asked how it is to live with a disability, and I was thinking about it more last night. I remembered the best explanation I have ever read called the Spoon Theory. It's a short read and I feel like it gets the point across really well.

Finally, I wanted to tell everyone who has sent supportive messages: Thank you so much. <3 It really means a lot, and I'm very glad I can help more people learn about others with disabilities and their own bodies.

Comments: 159 • Responses: 67  • Date: 

beckaandbaylee77 karma

First off, love your freckles. As a new nurse, I’m always looking for ways to improve patient care. What are some poor experiences that you’ve experienced in the hospital?

FreckledManatee124 karma

Oh god. Night shift nurses have almost killed me twice now. First time the guy had no idea what he was doing and ended up almost putting me into a coma instead of asking for help. Second time I went in and the night nurse kept trying to get my temperature, which she wouldn't be able to get a proper reading BECAUSE of my condition. I kept telling her and telling her. She wouldn't listen. Finally a doctor physically pulled the bed I was in away from her and wheeled me into the room they take heart attack patients to. My advice, if you don't know what's going on maybe the patient actually does know. Also pleaseeeeeee check for medical necklaces/bracelets.

Edit: Also thank you about the freckles <3

OscarMiguelRamirez21 karma

I think lots of nurses are in an overworked rut and deal with people who insist on stuff they made up or read on the internet, and they don’t handle very rare conditions very well. They assume you don’t know what you’re talking about. That sucks.

pedrotheterror22 karma

Also a lot of nurses think they are basically doctors and know it all. This is a very unpopular opinion but nurses are not the medical know it that all’s that society currently seems to think they are.

thiney4911 karma

But they do know more than the average person. Obviously they should defer to the doctor, but I would have assumed the doctor wasn't initially present in the situation described above. I'm definitely of the opinion that, until proven otherwise, the medical professionals have the right to assume they know more about medicine than the patient.

I_invented_bumholes9 karma

I would agree in most cases, but if the patient has a rare condition, chances are that patient knows alot about their condition, more-so than a nurse not trained in handling illnesses of that rarity.

thiney491 karma

I also agree with that, but the nurse won't know a priori if the patient actually has the condition, if they're à hypocondriaque, or if they're just looking for drugs. That's why I included the 'until proven otherwise' statement in my original comment.

FreckledManatee7 karma

In reply to both of you, I've actually had this conversation before with an intersex friend of mine. We both agreed that people with rare medical conditions definitely know more than nurses and doctors. This is because, usually we have had our conditions explained time and time again by different doctors, who always assume we live blindly about our condition. More importantly, it is because we *live* with the condition. There's things you can't learn in medical textbooks that affect a disabled person's day to day life.

I always get upset when doctors try to dumb down explanations to me, or sugar coat problems, and my friend agreed also. I want doctors and nurses to tell me things like that are. I think it's something that just comes with being in that hospital environment a lot.

Loladrinkingcola2 karma

I'm actually intersex too and was just thinking the same thing - I have to explain my condition or medication and sooooo often the nurse/doctor/receptionist will argue with me and I have to phone the secretary of the closest thing to a specialist I'm graciously permitted by the NHS to see (diabetes consultant who I see once a year, despite not having diabetes! ) and get her to write a letter putting it straight.

FreckledManatee2 karma

I remember getting to talk with someone who was intersex for the first time 2 years ago. I had never heard of it at all before that. At first I was really confused, but hearing her talk more I realized that we had a lot in common. I ended up talking with her after class for another hour. She was super awesome and I wish people were not so rude to her because of her appearance. I have so much respect for those who are intersex. Goodluck with your life and let those ignorant doctors have it! c:

smurfpiss4 karma

Someone very close to me has a similar issue to you. Addison's, meaning she doesn't produce cortisol. Possibly as a result of all the steroids she developed Bartters syndrome, where she cannot retain electrolytes. So she occasionally has to take some form of sodium. One time a nurse gave her 10 times her dose, well into lethal territory. She refused to to take it, nurse reprimanded her on her chart, was promptly fired the next day.

Good luck in life :)

FreckledManatee3 karma

Ohyea I know about Addison's. I have "medically induced Addison's", is how I believe my doctor put it. I don't have Bartter, but my doctors did give me a ton of sodium pills and told me I would probably have salt cravings. I did a little for the first year-ish, but never enough to need the pills. I'd just kind of shake table salt into my mouth sometimes lol. I'm super proud of her for standing up to the nurse! It's really hard to do. Thank you for sharing.

sbcloatitr1 karma

Why wouldn't an accurate reading because of you're condition?

FreckledManatee10 karma

It's not that it wasn't accurate, it just didn't make sense to her. My body temperature and blood pressure were very off because I was going into shock. I don't think she could even get a reading on my blood pressure and temperature wise, I was almost at a fever but my body was covered in goosebumps and shaking uncontrollably. Essentially, she was wasting time for about 15 min while I was slipping into a coma.

mesropa3 karma

Improper medication administration is a real killer. I had a pharmacy give me the wrong medication twice (antibiotics instead of blood pressure pills) I had to inform them of the screw up. Also had a a nurse almost double dose me with immune supresents. Any medication that looks different even if it's a refill I always double check online.

FreckledManatee2 karma

Jeez. Yea... the first nurse who essentially almost killed me was chewed out so loud by my doctor when she arrived that morning. I'm pretty sure they lost their job that day, or came very close. My doctor at the time was a really sassy latino woman who always had on huge heels, a short dress, and a long lab coat. You could hear her coming down the hall, and that morning you could hear how angry she was from a mile away lol.

Ironically enough, another nurse there also messed up. They gave me my emergency steroid dose without something to coat my stomach, so my steroids literally ate the lining in my stomach. I couldn't eat without severe stomach pain for almost month. I wish I was exaggerating, it was so awful.

bananaanalcreampies46 karma

Do you still have a fight or flight response or are you able to stay cool under stress?

FreckledManatee41 karma

It's really weird! It kind of depends honestly. I don't overly freak out about stuff, but say if something, like a big dog, chasing me... my flight response works pretty well. Roller coasters and stuff still have the same effect. People scaring me still has the same effect.

TheFirstStepIsADoozy22 karma

When you say you’ve had near death experiences, do you mean that you got so sick thy you nearly died or do you mean that you died and saw visions / visited the afterlife, etc?

FreckledManatee44 karma

The first time I went into shock I couldn't move my body. I eventually got to the point where I very clearly remember seeing the room I was in and myself from a 3rd person PoV from the corner of the ceiling. There were things I saw the backs of that I had never seen when I went into the room (like labels on jars and stuff). It was really surreal and somehow calming. Never could explain it.

jedicadesolo3 karma

Did you confirm afterwards any of the hidden stuff that you saw?

FreckledManatee8 karma

No, I had to be transported in an ambulance to a different emergency clinic that had my medications. I also couldn't move and was kind of slipping in and out of consciousness, so it wasn't a priority. I thought I was crazy until I mentioned it to my PSYCH professor years later, and she said it's actually common for near death experiences.

leakysheep13 karma

What do freckled lips look like? Is there a pattern in the distribution of them across your body?

What made you want to share?

Have you tried any anti-nausea medication?

FreckledManatee19 karma

They look the same as all over me. There no pattern, it's like "if the sun shines there, there's a ton of freckles". I might post a picture later if more people are interested, but right now I'm kinda self conscious just doing this.

What made me want to share is I was up late last night reading AMAs and wondered if anyone would be interested. Wrote up everything last night then I ended up falling asleep.

I have tried just about every anti nausea medication and method out there. Zofran worked for a while, but it's been over 8 years of this, so it eventually stopped having an effect after about a year and a half. It didn't make the nausea go away either, just lessen it.

leakysheep4 karma

If you're going to do this again, post a pic of a lip or mouth freckle! Thanks for sharing, it's always good to raise awareness and educate

FreckledManatee4 karma

Will do! I'm not quite sure why the post got removed, I thought I had enough proof...

leakysheep2 karma

What kind of proof do they want you to provide?

FreckledManatee3 karma

No idea. I thought I has sufficient proof and it's not like anyone didn't believe me...? The mods won't reply. :/ Kind of annoying

leakysheep4 karma

That sucks :( try again! Fight the power. Maybe there are guidelines out there for people in similar situations

FreckledManatee3 karma

Yea I don't really get it, it's not like I can send them a picture of my nonexistant adrenal glands and I don't feel comfortable posting my medical records.

keppinakki13 karma

How has the disease affected your social life?

FreckledManatee33 karma

It is really awkward when I tell my friends about it. People tend to think I'm kinda weird when I'm really weary about germs and stuff, but they don't realize its life and death. I also can't hang out with people late at night and I can't really drink/party. I play a lot of video games with friends all over the world into the late AM, so that balances it out in my opinion.

The_Indifferent2 karma

Pc or console?

FreckledManatee18 karma

PC mostly, I actually just finished building a custom PC on the 4th. I do play my Switch a lot too though...

EpicDaNoob1 karma

MY MAN! Also do you play Zelda BoTW?

FreckledManatee2 karma

Of course! Splatoon, Botw, Odyssey, and Mario Kart (I'm really good at Mario Kart). I love botw so much, it was one of the reasons I got the switch. I've beat it twice now, once in master mode. In my normal play through I 100% everything except koroks.

The_Indifferent1 karma

What do you usually play? I was big into Siege but they kind of broke the game so now I'm addicted to Overwatch.

FreckledManatee12 karma

I got back into Overwatch with this new computer! I play too much League, but it's fun cause I have a group of friends and we all suffer together. Same group of friends also all play Splatoon 2. Other than those, just misc. Steam games.

cheshire1371 karma

I play Overwatch on PC! I would totally play with you if you’re interested.

FreckledManatee5 karma

Sure my dude, though a quick look at your profile makes me think you're gonna be disappointed in me lolll! I'm like level 70 something. If you still wanna, PM me your username and tag and I'll add you when I get up tomorrow. c:

allusenamesaretakenn11 karma

How do you cope with the lack of sleep? That must be so draining.

FreckledManatee32 karma

I sleep A LOT and I wake up really late. It's made life hard so I was been homeschooled and now that I'm at Uni I take all my classes after 11. It is draining honestly. I'm almost always tired.

Stoneyay8 karma

1) Your freckles are honestly incredible. 2) How has this affected your personal relationships? I’m assuming it’s been hard on your family, but what about friends, significant others, etc? 3) Do you/have you worked, and how compliant were any employers?

FreckledManatee15 karma

  1. Thank you <3
  2. It really affected my family since I was so young. My mom carried the gene, but it never affected her for some reason. She really blamed herself and when I was little I found her crying about it one time (she never knew this). My friends have all been really cool about it. No one I'm close with thinks it's "weird", they just help me cope, which is amazing. My ex would stay up with me until I fell asleep, then would wake up early and attend school. He was seriously amazing and we are still close friends.
  3. I actually quit my first and only job because of this. I had a horrible night of nausea where I was doubled over awake until 7 AM. I texted my boss and told her there was no way I could come in because I literally had not fallen asleep. She told me that I had to find a replacement myself. On a Saturday morning. At 7 am. I texted everybody to ask if they could cover for me, and of course no one could. I let her know and said there was still no way I could come in. I was physically weak and shaking and falling asleep sitting up. She said if I didn't, she would put a note in my file. I was trying to go and my Mom wouldn't let me (I'm glad she didn't). After I finally got rested, I was so mad, and wrote up my 2 weeks right then.

TheJack388 karma

What in the actual fuck

How is what your former boss did not illegal? That should be illegal as fuck

FreckledManatee7 karma

In all honesty it was kind of my fault. I am required to formally tell her my condition and I did not because it was a part time job and I figured I wouldn't have a problem. From her POV I was probably some goofy teen trying to skip out on work, as I had been perfectly healthy the day before. I was planning on quitting about a month from then anyway, so I didn't make a big fuss over it.

TheJack383 karma

Ah, that does make it much more understandable from the bosses perspective, yeah

Have you tried getting another job? Or do you study?

(Also, as others have mentioned, your freckles are lovely :P )

FreckledManatee4 karma

In a month I'll be moving 4 hours away to Uni so no plans to right now. I do a lot of volunteer work which has kept me busy this summer. With my condition it's hard for me to keep a job and take classes full time, so I'll probably be looking into work either next Summer or maybe even next semester, if I can time my classes right. (Thank you <3 I really appreciate the love)

TheJack385 karma

Good luck with university!

FreckledManatee2 karma

Thank you!!

DiscombobulatedGuava2 karma

Does your uni allow for offline/ external courses? Ours in Australia has it for those who can’t physically be there for lectures and tutorials. That way it frees up your time and and doesn’t make it as stressful.

FreckledManatee2 karma

It does! I'm actually taking a hybrid this upcoming semester. I don't like fully online though, I feel like I don't learn as well as I do with lectures and being in person.

T_at7 karma

A pretty mundane question, but how much of your time is taken up with monitoring, treatment, etc.

Do you have daily / weekly / monthly check-ins with medical people? Apart from the daily medication, are there other routine things that need to be done to manage your health, and are there many things that most people take for granted that you can’t do?

FreckledManatee6 karma

I have to go in every 6 months and have a heart echo with my usual check-up, because I can get holes in my heart. (yeah.) I'm supposed to go to NIH every other year but... I don't reach out to them unless they contact me first. They're kinda of scary... last time I went a few years ago, they had me doing 1 MRI a day for 5 days straight...

There's so many things I feel like I have to do that people take for granted. I have low endurance and I'm usually tired, so I have trouble working out. I have to sleep a lot, so I have less time in the day which affects how many classes I can take at Uni.

dual26650s7 karma

I have freckles and autoimmune issues, and they're not nearly as life-threateningly serious - though they do harm my day to day happiness...

Anyway, I just wanted to say your freckles are great and probably (maybe? Unless you're into neck beard life, I don't judge) you shouldn't do it on Reddit (or the internet in general because face-matching stuff) but you should flaunt them! And if you do flaunt them on Reddit let me know.

Regardless, just have a great life and love it to the fullest!

FreckledManatee4 karma

I don't really like to "flaunt" them, I kind of dislike them to be honest. I get a lot of stares and weird remarks from people of all ages. However, it's not like I can turn them off or something, they're always there. Someone else requested I upload another picture showing the freckles on my lips, so I might upload a selfie tomorrow if this thread is still interesting people.

dual26650s3 karma

Well, they're unique and cute! Don't listen to the haters. Of course they will draw attention but I just wanted to be (another) voice of positivity regarding them, that's all. You do you, have a great week!

FreckledManatee3 karma

Thank you! It's always great to have positivity to balance the bad out. Have a great week also!

dual26650s3 karma

Also, manatees are glorious water cows and are completely under rated. That is all. :)

FreckledManatee3 karma

100% under rated and too good for this earth :,)

Aurum5551 karma

Didn't they recently come off of the endangered list?

FreckledManatee2 karma

Yea it actually seems that way, now they're apparently "threatened". Kinda wish they'd stay on it though, more recognition and funding to keep those sweeties safe. I actually got to swim with them in Crystal River a few years back and they are the most gentle and friendly creatures. You feel all the anxiety leave your body when you're just chillin with them.

boroglass16 karma

What’s it like being born on leap day?

FreckledManatee10 karma

I was wondering if anyone would notice. Really silly, people always love to point out that I'm 4. We always try to throw a big party when my birthday is on an actual leap year.

aurelorba6 karma

I have Addison's. Does that makes us cousins?

FreckledManatee4 karma

Haha in a way yes! Addison's is actually more common than PPNAD (which is weird to say since its a very uncommon thing) Do you have your adrenals removed also?

johnnyshotclock5 karma

How likely is it that if you reproduce your child will receive the condition you have? Knowing whatever the answer is, do you want children?

FreckledManatee6 karma

The likelyhood is pretty high they'll have the gene and the condition will manifest. I don't really want kids anyway, I have enough trouble dealing with myself lol.

DustinDortch5 karma

Wow, I was completely unaware that this was a thing. Are there alternatives to medicines that are available (like transplantation)? What insights have you learned about the adrenal system that you find interesting? Does your experience give you any inclination to work in a way that you could help people with similar experiences?

FreckledManatee7 karma

No alternatives. Once they're gone, they're gone for good. The medications I take are pills so it's not too bad, I just have to actually remember to take them. I believe, even if I got a transplant (which you can't because everyone needs their glands) they would still just overproduce. Not sure though, they haven't tested that.

What's interesting is how IMPORTANT the adrenal system is but how LITTLE everyone knows about it. Really it's insane. It affects absolutely everything about your body and 99% of people don't even know they exist. It's hard to explain in a work environment, because my bosses always look at me like I'm making it up.

I wanted to be a psychologist or psychiatrist forever, so I could help people like me. I have a lot of what I call "medical PTSD" that gets pretty intense. I eventually realized there was no way I could make it through med school with that. Maybe I'll look into working at some disability office one day? Never thought of it.

DustinDortch2 karma

It makes me think that since it is stable in pill form, that maybe there could be some time-delayed method so it was something that had to be daily... of course, then you have to remember on some odd schedule. Do you use any reminder apps or systems to help you?

FreckledManatee4 karma

I take 2 when I wake up and 2 in the evening, so that works fine. They have time delayed ones actually, but I never needed them. I used to use reminder stuff, but now it's just kind of ingrained in my mentally.

young_tatertot5 karma

What exactly happens when you’re in a situation that would warrant your body to release adrenaline, such as being scared?

FreckledManatee7 karma

I'm still scared. I have friends who prank scare me all the time. (not because of my condition, just cause it's what friends do) I'm pretty responsive lol. For real life or death situations I feel like it might be more significant of a change. Never had to deal with being in a genuinely scary situation like that other than medical emergencies, and I was already going into shock then.

Mandalf_the_Guy5 karma

What do you do for fun?

FreckledManatee7 karma

Play too many video games. I just recently built my own PC to further indulge in them. I also like to sketch things.

Hawke555 karma

Whats your favorite color?

FreckledManatee4 karma

Peach.

Jak_Atackka4 karma

Hello! I have a couple of questions.

  1. Did having your adrenal glands removed affect your height?
  2. Does adjusting your schedule to fall asleep later make any difference, or is it always right as you're about to fall asleep?

FreckledManatee5 karma

  1. Yes, I'm 4'11 and haven't grown since I was about 14, so I look like a "filled out" 14 year old and people always treat me like a lost child.
  2. I've done sleep studies to try to "trick" my body into thinking it's different times, and the nausea tends to either 1. follow my biological clock 2. go away fro a few days 3. make me nauseous for a few days straight

Vladmirpoopin4 karma

Have you read into things like CRISPR? I'm by no means a scientist but I'm wondering if maybe that could one day be used in your lifetime to cure what you have, or at least make life easier.

FreckledManatee3 karma

I have not. The problem with this is that they don't actually know which bits of DNA are what causes it. They have a general guess, but I'm in a 6% of people who don't have the "common" gene they see for PPNAD. Plus, the adrenals are gone, there's no undoing that or replacing them. Maybe in the future for someone else, though.

sbcloatitr3 karma

If you're intrested there is research into adrenal regeneration/transplantation: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4422080/#S1title

Sadly, I'm not sure what the actually time table is on it, and considering the rarity of your situation research is being done on other topics such as alzhiemers.

FreckledManatee3 karma

Honestly not interested at all. I can't risk surgery like that for a small chance it'll work.

sbcloatitr4 karma

I know the endocrine system is really sensitive and effects emotions, growth, and tons of other stuff. So how does not having adreanals affect your emotional responses, and did you suffer any sort of growth stunting due to your lack of adreanals?

FreckledManatee7 karma

I'm pretty much permanently 4'11. I look almost exactly like I did when I was 14, and now I'm 18, so people always treat me like a lost child. When I was younger and the condition was developing, I gained a ton of weight and went through puberty at 11, which was very awkward. Emotionally I'm just more anxious and stressed, I'm not like unemotional. I'm a pretty emotional person, I like to make jokes and laugh a lot. However, before I take my meds in the morning I'm like a zombie lol, I stumble around and I'm really quiet until they "kick in".

sbcloatitr4 karma

Do you think it's the lack of natural adrenal horomones that causes stress, or is it your meds overworking?

FreckledManatee5 karma

It's the lack of them for sure

nsadonvisadjco4 karma

How do you (try to) keep an optimistic outlook?

FreckledManatee7 karma

I really enjoy my friends, laughing, and being happy. I love creating things and seeing new things. A lot of people around me try to help me once I tell them about my disability. That really helps a lot. To be honest, some days I'm really not positive. I'll lay around at home feeling kinda of dumb emotionally. Some days I'm really motivated and I almost want to live and be successful in spite of everything.

die-ene3 karma

Does this also affect your ability to become angry due to not having adrenalin? (Sorry if the question is stupid but i'm curious)(also sorry for if any bad English)

FreckledManatee5 karma

Your English is great! I definitely get angry, my lack of glands has not changed that.

obeythewafflehouse3 karma

What's are your future plans? College?

FreckledManatee7 karma

Yes actually! I've been at a community college for 2 years, and I'm moving to Uni in a month. It's been my major life goal and I'm so excited and proud of myself!

Sh4lashashka3 karma

Have you ever accidentally skipped your medication?

FreckledManatee4 karma

I do it all the time on accident. Usually its the 2 pills in the evening. Sometimes I'll get a headache or get more tired than usual. When I forget the AM meds I never feel like I really wake up well.

Flysusuwatari3 karma

Was this difficult to diagnose? Are there definitive tests that can easily and conclusively provide the diagnosis you have? I could see how a kid reporting weight gain and migraines etc. could be not taken seriously.

FreckledManatee4 karma

Very. Forever doctors said I was "stressed from school" when I made straight A's and loved school. There are tests which conclusively provide, but they're not easy. It's essentially a week worth of drinking weird glucoses and then having a ton of blood removed and tested. When I was 11, doing the testing, I had 40 tubes of blood removed within one day (about 6 hours actually). They should have taken it more seriously. My parents understood me randomly gaining weight and throwing up from headaches was a real problem. You can look up images of the weight gain from Cushing's, it's very different looking from fatty weight gain. It looks like you're being blown up like a balloon.

Coltsfan2103 karma

You're awesome! Keep pushing. You're inspiring, even if you feel like you definitely aren't - you are. I know it's the internet and it's easy to just post things and hide behind computers, but still, this was brave. You look good! You seem like you're very down to Earth and funny. I hope you get to do all things in life which makes you happy. I see a lot of AMA's, and yours really inspired me. I guess I'm supposed to ask a question here, tho.

Do you ever do any writing or reading? You seem very creatively talented.

FreckledManatee3 karma

Awww thank you, that's really heartfelt and it means a lot. <3 I don't do any writing, that's just never been my kind of creative outlet. I've been trying to get back into reading for fun. College classes kind of sucked all my reading time. Currently I have a small stack of philosophy books on my dresser that I've been neglecting. I do like to sketch people and draw little doodles though!

Thank you again for the sweet comments! <3

mellofello73 karma

What do you enjoy doing more than anything else in the entire world?

FreckledManatee3 karma

Laughing and having a good time with my friends. My favorite memories are singing with friends to old and kind of cringe-y songs in my car.

mellofello72 karma

I can agree to that! My friends and I laugh about the absolute dumbest things, but I love it.

It’s actually funny you say that! Whenever I’m with old friends, we always end up listening to a bunch of outdated and cringey music that we all loved growing up. So nostalgic every time. What kind of music/artists are we talking? Haha

FreckledManatee2 karma

Pretty much anything from 2000-2012 for the cringe. I also know way too many songs from the 80s. If some old Beyonce or Rihanna comes on I get really into it haha

texasdragonftw3 karma

First off, I just want to point out how brave you are for sharing this. Most people feel very insecure about their health issues and as a result, other people continue to be misinformed about it. So by you being so open and cool about it, you're significantly impacting how the medical society is gonna view this case later on in life. So you go girl!!! My question to you is, did you manage to make peace with your condition, and try to think of the positive sides only? Has it been with you for long enough for you to accept it as who you are? Or do you still feel sad and somewhat fed up with all of this (especially the nausea)? Because this is definitely not something a normal person would be able to handle (again, you're braver than normal people).

P.S: I know you've heard this a thousand times already, but your freckles definitely blend in with who you seem to be (from the comments). And that's something special!! ⭐⭐

FreckledManatee2 karma

Thank you! But I feel like you're holding me up in a bigger light than I need. I'm definitely not positive about it. Like tonight, it's 2 am and I've felt like I'm going to throw up since about 9pm. I am frustrated. I'm very informed because I have to be. This was all thrown on me so quickly when I was young, so I had to adapt and learn. I'm still kind of shy about it... but it's more because it's such an awkward thing to talk about. I guess... I don't really think of my condition so much. It's like how people who are healthy don't think about how they're healthy every day. I just kind of deal, because I don't really have another option.

Thank you about the freckles! My friends love em and it's always great to hear positive comments about them. c: It helps the self esteem.

jmangelo673 karma

How has schooling been for you, as someone so deeply affected by illness on an almost day to day basis?

Also, how do you handle spicy food? Does it help your immune system in any way?

FreckledManatee2 karma

I had to drop out of middle school and start homeschooling. I then did online school. For the past two years I was about to attend a community college just fine, and I'll be going to Uni in a month, which I'm super proud of!

I'm not a big spicy food person, never was. I don't think it really affects my immune system, but it does upset my stomach, which can make my nausea worse.

thiney492 karma

With diabetes, there is work to make an artificial pancreas which could produce insulin and hopefully provide a sort of cure - is that sort of thing an option for you, or being researched to your knowledge - creating artificial adrenal glands?

Also, have you tried taking something like Zofran shortly before the nausea attacks happen?

FreckledManatee3 karma

I used to take Zofran, I've had the nausea for so long that it stopped working for me.

This disease is already researched so little that they are still trying to figure out everything that causes it. If they could make adrenals, it'll be a long time from now. I believe though, for my case, even if I had "new ones" they would still overproduce.

Fundindelve422 karma

How does something like panicking work with no adrenaline production?

FreckledManatee3 karma

I panic and stress about everything. I've never really noticed a difference in my emotions, maybe just how my body psychically reacts. It might be a little slower? The adrenal glands are not the only thing that trigger those hormones though.

Stepheninabox2 karma

Has your disease made it hard to maintain a social life?

FreckledManatee2 karma

Yes and no. I can't go to late parties/drink, but I'm not really into that anyway. I hang out with people during the day and I play video games online with people from all over the world as night, which I think is pretty social.

Stepheninabox2 karma

I guess mainly was curious as far as going out of the house and about with your immune deficiency.

FreckledManatee2 karma

Oh, with that I just have to make sure I bring my meds with me and awkwardly take them, which always gets looks. I get sick about twice a semester, which sucks. When my friends get sick I tell them they're quarantined. I just get sick a lot and get grumpy about it, kinda underwhelming.

daird11 karma

What happens when you do something that is typically considered an "adrenaline rush", like driving fast?

FreckledManatee1 karma

I still get excited. Roller coasters and stuff are still just as exciting as they were before. I've never really been able to notice a difference in stuff like that since the surgery. I think I would be able to in a life or death situation that needed quick action, but thankfully I've never been in a non-medical one.

AliceJoy1 karma

Is it possible that they didn’t completely remove the adrenals? Perhapesnyournrythem is messed up and the exogenous cortisol you take + the amount secreted from a price of functioning adrenal is too much and give you nausea?

I know it was a long time ago but can I ask about your lab results ? Do you recal your cortisol numbers? Urinare free cortisol etc ?

I’m having an issue right now with loads of symptoms and the only thing that keeps popping back is slightly elevated UFC

FreckledManatee1 karma

Oh they completely removed them. I got to see them lol... then my doctor dashed off excitedly to research. NIH is weird.

It's been over 7 years I do not remember if they even told me the numbers. The nausea started before the surgery, it is unrelated to my medications.

The UFC term sounds familiar, but I don't know honestly. I would assume it would be significantly higher, but you should take a specialist's word, not mine. If you think you are having symptoms of Cushing's, I would say to check other possibilities first as it is so rare and costly to diagnose. I had migranes and crazy weight gain. Also Cushing's tends to develop when one is still a child.

Hopefully it's something else! Let me know if you have any more questions.

Skip123451 karma

I have Addison’s, so likewise, I have to take medication twice a day. Have you tried a different medication to see if it would help with the nausea? I’m on prednisone currently. I think there’s at least one other medication that can be used besides hydrocortisone and prednisone.

FreckledManatee1 karma

No I cannot take another medication besides that. I had never actually heard of prednisone before either. From what I'm reading about it, it probably wouldn't be able to keep me alive if I replaced my hydrocortisol. Not sure though. I know a lot about this stuff but not a lot about the chemistry of the medications. Either way, the medication is not what caused the nausea, I actually got the nausea before I had the surgery. They expected it to go away after the surgery, but it did not.

Skip123451 karma

When they took out your adrenals, they essentially gave you medically induced Addison’s disease. Whereas you no longer have them, my adrenals stopped functioning. So prednisone should work for you as well, unless there is another reason they specifically want you on hydrocortisone. I wouldn’t recommend changing medication on your own, but know that there are a few other options for medication that you could talk with your doctor about.

A bit of trivia, President Kennedy had Addison’s Disease.

FreckledManatee2 karma

Yea my doctors have never mentioned it and actually last time I went for a check up my primary doctor said my test results were perfect, so I'll keep it the same.

That's really cool about Kennedy, I never knew. I wonder if he struggled with it at all, wish we could have had an AMA for him...

daird12 karma

Actually, his Addison's damn near killed him at one point- they even gave him last rites. For the second time in his life. People talk about Teddy being our most badass president, but JFK is a serious contender.

FreckledManatee1 karma

Woah that's insane, I never knew! Thank ya for the cool facts! c:

FreckledManatee1 karma

I actually just read up about this some more. For some unstated reason many doctors prescribe cortisol to cushings patients and prednisone to addisons patients. If I remember, I'll ask my doctor next time cause I'm really curious as to why. I wonder what the difference is...

Niggerboi1446-2 karma

Do you pee a lot?

FreckledManatee5 karma

It does not affect that at all... so normal amount?

Niggerboi14462 karma

So whats your mental health? Can you go into deeper insight and describe whats going on?

FreckledManatee4 karma

I tend to be really anxious because I know I can get very sick at any time. Also, all my hormones are messed up so I get waves of anxiety and depression, but I can't take medication for them, because it would mess up my hormones more. It all has to do with the hypo-pituitary-adrenal axis.

Niggerboi14461 karma

Lame, how often do you wake up from nightmares if any?

FreckledManatee3 karma

It depends. We think I get a lot of melatonin so I have really vivid and weird dreams. A lot of times I "wake up" in the dream, and stuff gets weird again. I've had a few nightmares that have actually woken me up though. They can get intense.

Aurum5551 karma

Do you have difficulty sleeping or waking up? I know in healthy humans there is cross regulation between adrenal and pineal glands, and the drugs you mentioned do not seem to include all of the adrenal produced hormones.

I know that hormonal interactions especially in the brain are delicate things and when we try to fix them it's basically playing calvinball but perhaps this could explain your nausea.

Followup do you have a normal circadian rhythm

FreckledManatee2 karma

I always have difficulty trying to sleep because I feel like I'm going to throw up. I have difficulty being awake until my meds "kick in" after about 20 min. I just feel incredibly groggy until then.

The nausea actually started before my surgery, so it's not the medications. My medications balance out the hormones as best as possible though man made methods. My pineal glands are working as expected for now. If I remember explanations correctly, other parts of my body kind of took other the production of some of those missing hormones. It's been a while so I don't quite remember if that's right. Last time I went to my doctor he said all my tests looked perfect, so I assume my medication is working as intended.

Not sure what is defined as normal, but my circadian rhythm follows day and night cycles fairly well, so I guess it's normal...ish.